[Barbara2007]

i have severe aplastic anemia-originally treated w/ATG (horse) in Nov.03. I am blood and platlet dependent weekly. i was not responding and the prograf was damaging my kidneys.My Dr. reccommended this trial. This particular research protocol was selected bcause I had received prior immunosuppressive therapy and had failed to respond or my diseaSE had returned following immunosupressive treatment. On Nov. 1st I was admitted to the Natl. Inst. of Health in Bethesda, MD. I had initially been screened w/blood tests, bone marrow biopsy and echcardiogram. At admission-I wore a 24 hr. holter monitor,another chest x-ray and EKG. The Campath was admisistered IV-the first initial dose was small and I reacted w/chills,fever and shakes. The nurses were right on it w/demorel and nice warm blankets.Iwas given magnesium IV-mine was low.Everything was closely monitored. i reacted for the first 3-4 days with chills, shakes, and fever but it was quickly stabilized. The staff there are the most compassionate,caring and optimistic folks. I was put on a 1800 calorie diet and w/every meal I ordered (I was trying to be good-honest! she would tell me if I was over my allotted calories- it got to be like food bingo! I went home after 10 days wearing the 24 hr. holter moniter again and then mailed it back. i sent tubes of blood to them on a regular basis-they provided the vials, canisters and mailing tubes and labels. I now send blood monthly. I went back for a 3 month check up and the same stuff was repeated (not the biopsy) No change really-I knew my counts had not yet responded. A few days after comig home after my initial treatment-I started to not feel very well-I thought my sugar was down-but I was dizzy,felt faint and my bones ached so much I could not get comfortable.The chills and fever came and I went to the ER and was admitted immediately and put on triple antibiotics and morphine drip. I was in there for a week. I was discharged wcounts of WBC-0.3, hgb-9, platlets-19, My platlets have continued to drop and now remain at 2-3 and my ANC at 100. I go to NIH again in May for the bone marow biopsy and I pray there is growth, If not the Dr. there said there would be something else they would try. I would go to clinical trials again there-there is hope, compassion, and so much education. Who knows? These trials may find a cure! i now receive aerosolized pentemidine monthly and take Valacyclovir (500mg) daily, cipro (500mg) twice daily along w/ambien, glipizide (diabeties Type II upon AA) and nexium and neurontin (600mg) for the neuropathy in my feet from case serum reaction to ATG. And my creatinine levels are back to normal. Has anyone else had this therapy?